Our New Normal [s] » Our little family's realization, that there is no normal

So, here we are at the two year mark with Vivia being treated for JDM. 

Here she is a couple of weeks ago. So grown up.

 

Life as we knew it ceases to exist. We have a new life with new foods, new routines, new habits, new heartaches, and new “normals”. Vivia continues to grow into a beautiful young woman. Her zest and zeal for life have returned. Her sweet little face has barely any lasting effects from the massive amounts of steroids that she was once on. Her personality has returned. She even got to go to Camp Boggy Creek, and has been chosen to return for a week this summer… We moved into a new house that is covered with trees and the yard has shade all day long, she is now a big sister to a little sister. Her Rheumatologist suggested a new drug called Cellcept to help wean her off the dreaded prednisone, and it works great – so far so good. And all is well.

And then Spring hits.

And I begin to see those dam#$% bumps on her elbow again. I begin to see her cheeks flush like they’ve been stained watercolor paint, I see a few scales on her knuckles, she has been having huge mood swings again (both at home, and at school). I ask her how she’s doing. “I’m fine.” is all I ever get. She knows that anything more may mean another needle or trip to the Infusion room. Time to come back in- no recess, no more eating lunch outside under the shady tree, no more PE, no more Daisy Scouts, no more field trips with the class to Sea World. No More. Not until next fall. Here’s where we hole up, hunker down and try not to be depressed all summer long.

Do I call the rheumy and report this, or not? My heart sinks because it is just further proof that this disease still keeps trying to rear it’s unwanted, demonic head! I pray, beg, and plead with God to take this from her, from us. And I wait. The waiting is the worst.

This sunlight which I need so badly (says MY doc) is the very thing that confuses her little body into attacking itself to the point of paralysis or even death in a third of the cases. It’s easy to forget in the few short months of fall and winter that we get here in the sunshine state, that once spring hits, all bets are off- and it’s back indoors for the Martinez’  We have tried so many things to protect her from the UV rays: like Sunblock of all kinds (stick, lotion, spray, oil – you name it) to sunclothes – which she hates wearing, to sunhats and shade, and even a laser treatment that is supposed to stop her body from reacting to the sun’s frequency. But when it comes down to it- the sun wins. everytime.

How do you beat a thing that consumes all in its path? How do you stay away from something that was designed to light the day- and God said it was good? How do you get away from the very thing that is supposed to bring life?

I. don’t. know.

We continue to do our best. But it really feels that we are a tiny ant standing next to a dinosaur.

Every child is unique and special, and amazing. But not for this. Not because of this. In spite of this- is my goal for her.

I continue to search for the latest and most cutting edge of treatments for all things auto-immune. When several people I know- completely unrelated to each other mention something to me- I stand up and listen.

I had been reading up a lot on Colostrum lately. Studies have shown people having remarkable results when taking this as a supplement. A good friend of ours told us he had heard a lot of good things about it, and happened to be personal friends with one of the leading doctors researching this in the world. My ears perked- sounds promising.

I take Vivia to see her Integrative doctor, Dr. Colbert (who himself has an autoimmune disease and successfully treats it through diet and natural means) and ask “Have you heard of this Colostrum stuff?”

“Funny you should ask,” he says.

Come to find out, he is now prescribing it left and right because, I quote “I’ve never seen anything like it…”

Seeing as I don’t believe in coincidences, I decide to give it a try. My friend -that I mentioned before- spoke to his people, and voila- I received product free for review. ~ all these opinions are my own and may differ from yours ~ 

This one:

Vivia has been on it for about a month now. She likes the Children’s chewables in Orange better than Cherry. Although, I may just go with the pill form next time, because she’s already a pro at taking pills.

She thinks it’s funny when I tell her it is from a cow- and she tells me she thinks it tastes like a milkshake.

I feel hopeful that something this simple and gentle to her system may actually help her feel better.

As long as it “does no harm” it can’t hurt to try! Supposedly there’s this spray as well that you can spray right into your mouth a couple times a day that is supposed to help regulate/balance out the immune system.

We’ll see…

Until then, I keep ordering UV clothes from Coolibar.com, Landsend.com, Boden.com and even EBAY. I continue to find ways to have fun (without the sun), and we look forward to July when MAKE A WISH sends us to AUSTRALIA for Vivia’s wish.

I will be posting more about that, later.